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Smith-Magenis Syndrome Awareness Day

Smith-Magenis Syndrome Awareness Day

SMS, a rare syndrome caused by a deletion or mutation on section p11.2 of the 17th chromosome, causes many behavioral abnormalities that can be extremely stressful for the families affected by this condition.

November is the designated Smith-Magenis Syndrome Awareness Month, with SMS Day being celebrated around the world on the seventeenth.

“A lot of focus is given to strategies that will help our families cope with the challenging behavioral difficulties of SMS,” PRISMS executive director Emily Fields explains, “but we also want to recognize the many positive attributes people with Smith-Magenis syndrome bring to our communities.”

Those SMS Superpowers are the ability to love everyone, performing without sleep and beginning each day anew.

However Jackie, 25 and born with Smith-Magenis syndrome, is not sporting her super hero shirt just for awareness.

She has a unique connection to the Justice League.

“I know Batman,” Jackie mentions nonchalantly.

“You know, Ben Affleck. He was at my gym. We worked out together.”

In 2014, Ben Affleck was in Jackie’s hometown for filming of the psychological thriller, “Gone Girl.”

During that time, he began preparing for his next role as the crime-fighting billionaire Bruce Wayne.

And he needed a place to work out.

He found that place at the medically integrated facility, Fitness Plus. It is part of the Saint Francis Medical Center where Jackie’s mom, Bernadette Huston is employed.

Fitness Plus boasts the area’s largest indoor track and four different pools available for all types of water exercise.

“It’s a great facility,” Bernadette explains. “It’s open for employees and patients of the hospital, but also membership is available to the public. So, we have people of all different abilities working out together in the same space.”

And that is how two superheroes, one with Smith-Magenis syndrome and one with an Academy Award, met in a weight room.

Not that Jackie is all that star struck.

“He was just really nice.”

After another moment she adds, “And cute!”

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Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
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Meet Our Blogger

Tina McGrevy lives in the Midwest with her husband Charlie and their three sons: Garrett diagnosed in 2001 with Smith-Magenis Syndrome (SMS), Patrick and Brennan. Tina serves on the Board of Directors for PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome), the international organization dedicated to education, awareness and research of SMS. She has been published in Chicken Soup for the Soul: All in the Family and New Moms, and numerous online publications. Tina’s dream is to follow in the footsteps of another Ohio Valley mom, Erma Bombeck, with humorous stories for the special needs community. Tina blogs about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS).

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